Thursday, June 15, 2017

Carers Week

It's Carers Week, and we're supposed to acknowledge those who have cared for us during our illness.
I would like to acknowledge my carer: Me.
My ex would leave me alone for 18 hours at a time so he wouldn't have to provide care – no matter how many times I reminded him, he wouldn't even leave a sandwich and a pitcher of water next to the bed for me (and then he wonders why he's an ex!). When I was deathly ill, organs beginning to shut down, I wanted to go home to die, and my mother reminded me that growing up I had been told that I was out as soon as I graduated; she wasn't going to take care of me, either, even though I didn't really need nursing, I just needed someone to cook meals (which she was already doing for herself and Dad).
I tried hiring people, but they only wanted to do what they wanted to do; a man was happy to drive me wherever I wanted to go, but cooking and cleaning and caregiving were "women's work" and he was not willing to do that. A woman who claimed that she had been paid caregiver for a woman with Alzheimer's had a very different idea of what the job entailed than I did; it turned out that she was merely the daytime babysitter while the family went to work – the patient's daughter did all the cooking and cleaning, so all she was required to do was make sure the patient didn't burn down the house and periodically coax the patient to go potty. She thought it was outrageous that I expected her to make meals for me and claimed not to know how to load a dishwasher, even after I'd showed her how, much less doing any of the other chores. She thought the job was merely sitting on the couch reading a book or watching TV, not actual work.
I wrote a blog post years ago pointing out that the books about living with CFS are written by those who have family caring for them, not those who are using every ounce of energy to buy and prepare food, and thus give a very different impression of how tough it is.
The story would sound much more heartbreaking with tales of "I haven't eaten in a week because I cannot get out of bed to get to the kitchen" than it does with "I wasn't feeling well, so my daughter made me a lovely homemade chicken soup." Or "I don't recall the last time I bathed because I don't have the energy to get to the bathroom" versus "my husband drew my bath, carried me to the tub, gently washed me, and carried me back to bed."
When I'm up to it, I will hardboil a dozen eggs, and I keep cooked shrimp in the freezer in single-serve packets, only takes a couple minutes to pull out two eggs and a baggie of shrimp for a high-protein lunch.
The problem is the days that I can't get out of bed without falling to the floor. Eventually I realized that I could stack several cases of bottled water and nutrition shakes next to the bed, and keep things like PopTarts and cereal bars on the bedside table for the days that I couldn't make it to the kitchen. Or make PBJ sandwiches.
Then someone mentioned taking her lunch to work in a mini-crockpot; takes 45 minutes to an hour to heat leftovers (or a can of something). For $20 I got one to keep next to the bed with a variety of canned goods, so now I can eat soup, stew, vegetables, etc., not just cereal bars, when I'm not able to get to the kitchen. A can of chicken and a can of carrots, plus the liquid from each, and part of a bottled water, and I have chicken soup. If I line the container with foil, I don't have to use my precious bottled water to wash it between meals.
I have experimented with other options, some more successful than others. I can put eggs in and leave them for a couple hours to get hardboiled (because the water never gets to boiling, so you have to cook them longer), but trying to make an omelette was not as successful. Meat needs to be pre-cooked, since this mini-crockpot is intended to reheat, not cook; but you can use canned chicken or thick-sliced roast beef from the deli counter.
If you are making something really dense like couscous, heat the water first, or else the center will be cold. Instant rice works better than regular.
Last week I attempted casserole. Heat the water, then put in the dry noodles, canned tuna, and veggies for a few minutes until the noodles were done. Not bad.
Of course, all my cooking creativity doesn't solve the problem of getting the house cleaned or the trash taken out, but it solves the immediate problem of getting enough nutrition to stay alive. I can take out the trash on a good day.

Thursday, June 1, 2017

Hashtag Advocacy

Hi everyone, 
Save My Care is launching our effort to elevate the #IAmAPreExistingCondition hashtag today Thursday, June 1, 2017. The goal is to put faces, names, and stories to the 1 in 6 people who may lose access to affordable health coverage under the GOP's American Health Care Act (AHCA). We'll be asking people to post photos of themselves on the hashtag holding a sign that includes their preexisting conditions, or the preexisting conditions they are concerned about.
There are a few ways you and your organization can participate:
Onward,

Ted

Wednesday, May 24, 2017

ME and enterovirus

Dr. Hyde suggests that if the polio vaccine engineered decades ago had covered a few more enteroviral strains "M.E." would not exist
 
 
* * *
Pretty much what Dr. Bruno said, too -- the polio vaccine covers the top three strains, and ME is the #4 most-damaging one.
 
 

Wednesday, May 17, 2017

Write about your bad experience

You and Me Magazine will pay $125 for your first-person essay about your experiences as a patient
 
 
 

Write about your bad experience

You and Me Magazine will pay $150 for your first-person essay about your experiences as a patient

Friday, May 12, 2017

"Happy" ME/CFS Awareness Day

Once again, it's May 12, time to bang our heads against the wall trying to convince the world that CFS is not just depression or laziness.
 
Once again, it's May 12, time to cross off another year of living without a cure -- if you can call what we do "living" ... it's merely existing, taking up space, using oxygen, wishing that we could do something productive.
 
But this year there's some hope -- you can donate here Registration to fund mitochondrial research into CFS.  Mitochondrial dysfunction is why we're constantly tired.  They're finally looking into something useful instead of wasting research money on psychiatric explanations that do nothing to help us.
 
This is my 30th year of being sick.  I'd like to see 30 people donate in honor of my wasted life.  We are (of course) Team CFS.
 
 

Wednesday, May 10, 2017

Donate for CFS Research

 
DONATE FOR RESEARCH: https://act.ucsd.edu/mitowalkandroll5k/add  -- we are Team CFS Facts
 
Scroll down past the walk registration lines on the form and there's a line for additional donation. 

Tuesday, May 2, 2017

ME Awareness Month -- California Legislature

 

Action Alert! California residents call your state Senator today and ask them to support SCR-40 Myalgic Encephalomyelitis Awareness Month. We are heading for a vote in 10 days and need their support. Use our easy step-by-step guide here: http://bit.ly/2oR9iUm